I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: okarol on November 04, 2006, 03:29:55 PM
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TIMES SPECIAL REPORT
With kidney transplants, a question of how to ration life
More older patients are getting the organs. But possible new rules may cut their odds.
By Alan Zarembo
Los Angeles Times Staff Writer
November 5, 2006
It was Monday, Shawn Stringfellow's usual night to shoot pool.
He gunned the engine of his Harley-Davidson and pulled out of the restaurant parking lot as his fiancee waved goodbye.
He was 30 years old, healthy and happily employed as a heavy-equipment mechanic. Soon, he and Kellie Highland would be married.
"I love you," she mouthed, as his black leather jacket disappeared into traffic.
With his crisp goatee and helmet-less head, Stringfellow looked like a tough biker. "If I wanted to wear a helmet, I'd ride in a car," he liked to say.
He had a soft side, though. He roared down the street wearing jeans covered with tiny hearts that Highland had scribbled in ballpoint pen during dinner.
He'd promised to be home by midnight.
Life is unpredictable. Just before 11 p.m., he finished his last beer at the pool hall and fired up the Harley. A few miles down the interstate, he drove off the side, struck a construction barrel and rolled his motorcycle.
The next day, May 7, 2002, he was on life support. His heart was still beating, but he was brain-dead.
With his family's consent, calls went out to transplant centers throughout the region. He was an ideal organ donor.
Dr. Ben Vernon, the transplant surgeon on call across town at Porter Adventist Hospital, received the news around midnight: two young kidneys blood type A-positive available in Denver.
A patient of his stood a strong chance of getting one. This man had waited a long time three years. To Vernon, it looked like a go.
He instructed his staff to summon the patient to the hospital. The staff also called Dr. David Gillum, another member of the transplant team.
Gillum sat up in bed and shuddered: The patient was 85 years old.
Were they serious?
What was the sense in giving such perfect kidneys to such an old man when hundreds of younger people were waiting nearby?
Exciting news
The telephone rang around midnight at 85-year-old Clois Guthrie's house on the plains northeast of Denver.
This was it, his chance. He and his wife, Nina, hurried to pack.
Guthrie, a retired osteopathic surgeon known to friends as Gus, had spent much of his life piloting small airplanes into the Colorado hinterlands to remove infected gallbladders and ruptured appendixes. He'd been a bull of a man, with a full life. He had married twice, raised three children and water-skied on Lake Powell well into his 70s.
Now, he was a full-time patient.
At a dialysis clinic 45 miles from his farm near Fort Morgan, Guthrie would slump in a padded recliner for hours, sleeping or watching other patients as the machine filtered toxins from his blood. The air always smelled of bleach, used to clean the machines.
His world had changed so quickly.
Five years earlier, he had gone to the hospital for a heart bypass and valve replacement operation. During the procedure, his kidneys began to fail.
Within a year, they were useless.
He told Nina that he would rather die than go through the misery of dialysis.
He eventually relented. He sat in his chair quietly now, like everyone else, hoping for a kidney transplant.
Unlike livers, hearts and lungs, which are aimed at the patients most likely to die without new organs, kidneys go primarily to those who have waited the longest, though genetics play some role.
It was possible to circumvent the process by getting a kidney from a relative, and Guthrie's son, wife and sister-in-law had each offered to donate one of theirs.
But Guthrie refused. "I'm not selfish enough to consider that," he told his wife.
His kidney would have to come from somebody who had died.
Two transplant centers, in Scottsdale, Ariz., and Seattle, had refused to accept him on their lists because of cancerous cells found in his prostate, even though they did not appear to be multiplying.
Porter Adventist the same hospital where he'd had his heart operation finally offered him a spot in line.
On this morning, Guthrie was third on the regional list, a backup behind two younger patients at other transplant centers in Denver. If either of those candidates was unavailable or unsuitable a common occurrence he would get his kidney.
Nina took the wheel of their Cadillac and raced to the hospital 100 miles away.
As the Denver lights grew closer, the couple talked about what life might be like again without dialysis a time they both could barely remember.
Vehemently opposed
Gillum was determined to prevent the transplant.
The kidneys could last decades if given to younger patients, the nephrologist told Vernon, the surgeon, on the phone that morning. Guthrie probably had just a few years more to live, with or without a transplant. He could die on the operating table.
It was not just unreasonable, Gillum contended, it was unethical to give a young kidney to an 85-year-old.
Vernon, who had performed hundreds of transplants, was confident that Guthrie was healthy enough to survive an operation.
He remembered a basic ethical lesson from medical school: Do what is best for the patient in front of you. Guthrie had waited his turn like everyone else. Who could know how long another recipient would live?
"You don't get to change the rules of Monopoly just because you want to play another way," Vernon said later, recalling his stance.
The doctors were at an impasse but only for a moment.
Vernon backed down. He didn't want strife in the program, and he figured that Guthrie, with a top spot on the hospital's list, would get another chance soon.
Guthrie was having blood drawn for pre-surgical tests when a hospital attendant opened the lab door. Without explanation, the woman said it would not be necessary to continue.
On the long drive back home, Guthrie fumed. His wife told him that the organ was probably in poor shape.
A few weeks later, the transplant team decided to remove Guthrie entirely from the waiting list. He was too old.
When Guthrie went to the hospital, it fell to Vernon to deliver the news. He kept apologizing, saying he had been outvoted.
Guthrie never stopped resenting it.
"If they had just let me have that kidney, just let me have the chance at one," his wife remembers him repeating.
Favor the young?
The Guthrie case was a fleeting moment in the long careers of two doctors.
Four years later, however, the debate over how to allocate the scarce resource of donated kidneys is unfolding on a national scale.
With little public scrutiny, transplant doctors and administrators are discussing who should receive life-extending kidneys and support is growing for a national system that would favor the young.
The United Network for Organ Sharing, which oversees transplantation for the federal government, has already given patients younger than 18 an advantage. Last year, it moved them to the front of the line for high-quality organs from donors younger than 35.
Now the network is drafting a kidney allocation scheme for adults, who account for more than 95% of transplants using kidneys from cadavers. A formal proposal and public hearings are expected next year. The final decision will rest with the U.S. Health Resources and Services Administration.
The reexamination is largely based on a computer analysis of data on more than 300,000 patients placed on kidney waiting lists since 1987 including age, race, health, body mass index, diagnosis, years on dialysis and years of survival after transplant.
The analysis shows which types of recipients should be favored in order to squeeze the maximum life out of the pool of all available kidneys.
Without a change, proponents say, the current system is headed for collapse.
Over the last decade, the number of people waiting for kidneys nationwide has more than doubled to about 68,500, as of last week. It could reach 100,000 by 2010, some researchers estimate.
The average wait now exceeds three years and up to seven years in the biggest cities.
The growth has been driven by older patients over 50, and increasingly over 65 who are joining the waiting list in record numbers and claiming an unprecedented share of kidneys. The U.S. population is aging, and as transplantation becomes more routine, older people are pushing for the better quality of life it can offer. At the most extreme, a hospital in Pennsylvania recently put a kidney from a cadaver into a 90-year-old.
Even so, long before their new kidneys wear out, many older recipients die of the myriad afflictions that come with aging.
From a statistical standpoint, kidneys are being squandered.
Nearly everybody, at least up to age 70, lives longer with a transplant than with dialysis. But the young gain the most extra years of life. In the mathematics of transplantation, they have the potential for the most "net lifetime survival benefit."
Maximizing the benefit, in many respects, is a harsh calculation.
Race, weight, disease type and length of time on dialysis all count. Blacks, for example, tend to survive longer on dialysis than whites and Asians, but do less well with transplants. Obese patients tend to live longer on dialysis than normal-weight patients, but not as long with transplants.
A purely utilitarian equation would favor young, trim, whites and Asians who have been on dialysis less than a year.
Nobody is arguing for that or any formula that would set absolute limits. Nothing has been decided, and waiting time could still be figured in.
But age, the most important factor in predicting survival, is an unavoidable consideration.
The analysts have returned to the database for a solution. In a former icehouse in Ann Arbor, Mich. headquarters of the Scientific Registry of Transplant Recipients computers are re-sifting the data, simulating how more than a dozen different formulas might play out. All factor in age.
It is a journey into controversial territory: how to balance what is best for society with what is best for the individual.
In the vast sea of numbers, one patient is imperceptible.
Each point, however, is a life.
Hospital changes rules
Guthrie never returned to Porter Hospital but he left a powerful legacy.
His case spurred the transplant team to examine its policy on age. In the ensuing months, it decided to make a significant change.
Patients 70 to 79 would be considered candidates for subpar organs or organs from living donors, usually relatives. Patients older than 79 would no longer be accepted.
The center was well within its rights. Though federal rules control the allocation of organs, hospitals set their own policies on who to let on the waiting lists and whether to proceed with transplants when organs become available.
"We all felt uneasy about" the change, said Dr. Mark Dillingham, a kidney specialist at the hospital. "But it made sense to have an age limit somewhere."
Over the months, the doctors lost track of Guthrie.
His wife, Nina, watched him grow increasingly frail. His eyesight and hearing faded. She had always supported his quest for a kidney, always listened as he revisited his lost opportunity.
Privately, she wondered how much a transplant would have helped.
"I had to question in my own mind about the wisdom of giving it to an older person when a younger person could get a lot more years from it," she recalled.
For 2 1/2 more years, her husband continued the dialysis he dreaded.
In January 2005, at age 88, he died of a heart attack.
Nina, now 81, left the farm and moved into a gray brick house in the countryside southeast of Denver, just down a gravel road from her son, a commercial airline pilot.
She still thinks about the kidney sometimes.
"It's a decision I'm glad I didn't have to make," she said. "It's like playing God."
Two doctors' stances unchanged
Gillum has treated hundreds of patients since the Guthrie case, which he had nearly forgotten. But he was curious to learn what had become of the elderly man.
He nodded when he heard: The hospital's decision had been right.
Society is uncomfortable with the idea of rationing life, the doctor said recently after a long morning at a dialysis clinic.
"We haven't been very good about restricting access to the list," he said. "We have a limited supply" of organs. "And we keep letting more people enter the room to compete."
He added, "There is a point where you are going to have to make some utilitarian decisions."
It seems clear, he said, that the young should be favored.
"By age 70, you've had a full life," said Gillum, who is 54. "You've done what you need to do. You've amassed your fortune or not. You've raised your family."
He recalled two of his patients on dialysis.
A man in his early 20s was waiting for a kidney when he got an infection through a dialysis catheter. It spread to his heart, and he died during surgery to replace a heart valve.
A woman in her late 20s developed a sore on her arm, just over the spot where doctors joined an artery and vein to serve as a port for a dialysis needle. The sore erupted one night. "She was found in her bed," he said. "All her blood was in her sheets."
These young deaths are the hardest for him to take.
Vernon still thinks of Guthrie.
The surgeon remembers the last time he saw the patient and his wife. It was one of the hardest things the doctor had ever had to do to play God for a moment.
Hearing how Guthrie died, Vernon, 52, paused. Prolonged dialysis can strain the heart. Could he have lived longer?
Just to unleash him from dialysis for those few years that would have been a good use of a kidney, Vernon said.
He feels strongly that individual lives can't be trusted to computer formulas.
There is no way to know which elderly transplant recipient will defy the odds and live past 90, which middle-aged patient will mysteriously reject his kidney, which young patient will stop taking his anti-rejection medicines.
Death is unpredictable. Vernon knew that lesson better than most.
In February 1978, his father, a 55-year-old pathologist and amateur pilot, flew into a blizzard. A brother and sister were passengers, as were his sister's boyfriend and another friend.
The Cessna crashed over Yoder, Colo., killing everybody on board.
Last March, Vernon, who serves on the board of the national organ transplant network, was moved to speak out.
At a meeting in Long Beach, he sliced into the dry scientific debate over kidney allocation, warning against the cold calculations of utilitarianism.
He invoked the U.S. sterilization of mental patients in the 1920s; he even mentioned the Nazis.
Supposedly scientific arguments, he said, were "used by Nazi Germany to institute some laws that now, clearly, in retrospect, were atrocities and took them down the path toward genocide."
The room was silent.
The meeting chairman, perhaps sensing the discomfort of the other doctors, said, "I don't want a response to that."
A mixed outcome
Shawn Stringfellow's kidneys went to men far younger than Guthrie.
The right one went to a 53-year-old grade school secretary from Italy. He had been at the top of the regional list.
The patient has since returned to Italy, and relatives in Colorado reported to his doctor last December that the kidney was working fine.
The left kidney went to the next patient in line, Santiago Griego, a former hospital painter. He was 51 at the time.
Suffering from diabetes, he had spent more than three years on dialysis, waiting. His body often cramped during the treatments, draining him so much that he could do nothing but sleep afterward.
He was so depressed that he told his wife, Patricia, that if he didn't get a kidney soon, he would stop dialysis and die.
His transplant, however, has not produced the results he expected.
Though most transplant patients report a better quality of life with a new organ, some, like Griego, don't anticipate ongoing health ordeals.
"I thought that once I got my kidney, I would be restored back to normal," he said.
His problems stem mostly from diabetes and have been exacerbated by his daily regimen of immunosuppressive drugs that protect his kidney from rejection.
The bones in his left leg had become brittle during his years on dialysis a common side effect and shattered shortly after his operation.
The next year, his right leg became infected through a gash in his foot. His immune system could not quell the infection. Doctors amputated the leg below the knee.
In the last couple of years, he has had at least eight cysts a complication from the drugs removed from his back, legs and groin. "If they would have explained everything that would happen to me," Griego said, "I would have turned down."
His solace, he said, is in his two young grandchildren who live with their mother in the spare room of his apartment. Too weak to work, hobbling around on a cane, he lives off federal disability benefits and his wife's earnings as a saleswoman.
"Someone else gave me life," he said. "That's the only thing that stops me from giving it up."
Life without Shawn
Kellie is Kellie Stringfellow now, having taken Shawn's last name after his death.
In her apartment, his motorcycle manuals are neatly lined up next to his old albums. Kellie saved everything she could. She repaired his leather jacket. Her father restored the motorcycle, a 1995 Harley Road King.
Nobody rides it.
When she heard that both of Shawn's kidneys were still working, Kellie cried.
It was the first she had heard of them since a few weeks after Shawn's death, when a letter arrived from the Colorado organ agency saying the kidneys, along with his heart and liver, had been transplanted.
Shawn would have been pleased, she said.
On one of their first dates, the couple had pulled out their driver's licenses to compare pictures. She noticed that they both had organ donor stickers.
He told her he didn't care who got his organs, as long as the recipients were deserving.
alan.zarembo@latimes.com
original: http://www.latimes.com/news/science/la-me-kidney5nov05,0,1468294.story?coll=la-home-headlines
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~Karol
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Guthrie should have been transplanted. Here is an example of a man who led an exemplary life as a physician helping people over many many years. I'm troubled that another physician while attempting to play god killed Guthrie's chance for the transplant. He also went outside the established tenants of fairness established by UNOS in stopping the transplant. I wonder if he was ever professionally disciplined for his despicable conduct?
A young person getting a transplant isn't necessarily guaranteed decades of survivial anyway. There are numerous stories about young and maybe foolish recipients who after getting their transplants become non-compliant and promptly lose them. I knew a fellow patient, 16 years old, when I was on dialysis who did just that. He received a kidney donated by an older sister, failed to take his meds, and ended up back on dialysis within a year.
The story goes on to say that Guthrie died several years later of a heart attack without ever getting a transplant. Who is to say that he wouldn't have lived many years longer had he received that 30 year old kidney? The complications of dialysis are many and one unavoidable consequence of long term dialysis is coronary artery disease.
The thought of rationing transplantable organs brings back memories of the dialysis death committees of the 1960's and 1970's. Back then when dialysis was relatively new and uncommon groups of physicians met to decide who would live and who would die. It almost sounds like the Nazi concentration camp selections of the 1940's. Nobody wants the death committees back and nobody should want organs rationed by age.
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"By age 70, you've had a full life," said Gillum, who is 54. "You've done what you need to do. You've amassed your fortune or not. You've raised your family."
Right. So in 16 years, he's going to stop wanting to live? "Check out time is 2022, sir. Please leave your key at the front desk on your way out." Sorry Dr. Gillum, you've hit 70 - no more high tech medical care for you - you're not worth it at this age. :P
My gram is 89. He figures the last 19 years haven't been important to her? None of her charity work, time spent taking care of my sick grandfather, my dying mother, or any of her elderly friends was worth anything?
Now I realize that Gram, at 89, would probably refuse treatment anyhow. She keeps saying she's ready to go. But that's her choice. It shouldn't be pushed on her by anyone, nor should she be denied the chance to make to 100 if that is what she wants to fight for.
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I will avoid the age issue until I've thought about it a bit more, but I would like to say that I don't think it's right to dismiss living donors. Many people do not have anyone willing to donate and are forced to wait for a cadaveric kidney. I think (especially if you are a marginal candidate for any reason) that you should be obligated to seriously look at potential donors that truly want to do it. That would free up many organs for others who need them.
Cora
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This is the graphic that accompanied the LA Times article.
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This is a tough issue, because if you give the kidneys to older people who won't live as long, you're hurting the rest of the people on the waiting list indirectly since they'll have to wait longer that in a 'statistically optimized' allocation system. Some of them might die or suffer more complications from a longer wait.
That being said, I would never deny a kidney to an 85 year old who had been waiting for three years. I simply can't agree that it's unethical to give him a kidney that could go to a younger person. Denying him the kidney seems a lot more unethical to me. I like the rule 'do what's best for the patient in front of you', and I think it's important for the trust relationship between doctor and patient and for the credibility of the medical profession that all doctors live by this rule.
Obviously, the issue of organ shortage has to be dealt with, but I don't think such grisly calculations will be the solution. I'm hoping greater awareness (and therefore more donations) and medical breakthroughs will get us out of this. Just my 0.02$...
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I think that some of the criteria are already in place. We all had to go through a battery of tests to make sure that we were healthy enough for a transplant. I know that here in the Ottawa area they have given kidneys to folks in their 70s because they were otherwise healthy. I think that the health criteria alone would preclude many older people.
On a slightly different, but still controversial note, I wanted to say that I don't think it's right for people to deny their donors and wait for a cadaver. Some people are forced to wait for a cadaveric kidney because they have no donors. If living donors are available, I think that they should be the first priority. More living donation would in effect facilitate 2 transplants. The living donor transplant and the cadaveric transplant that could then go to someone else. I think it's selfish of people to refuse a living donor and make the list more crowded. My Mom wanted to donate and I'll admit that I was a bit relieved that she wasn't eligible, but I would have taken it and left a list spot for someone else had we worked out.
Cora
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I liked the graphs. It kind of hit shome that we have an aging population, more olde rpeople than younger people in the U.S. now, so theycan be misleading.
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I think that some of the criteria are already in place. We all had to go through a battery of tests to make sure that we were healthy enough for a transplant. I know that here in the Ottawa area they have given kidneys to folks in their 70s because they were otherwise healthy. I think that the health criteria alone would preclude many older people.
On a slightly different, but still controversial note, I wanted to say that I don't think it's right for people to deny their donors and wait for a cadaver. Some people are forced to wait for a cadaveric kidney because they have no donors. If living donors are available, I think that they should be the first priority. More living donation would in effect facilitate 2 transplants. The living donor transplant and the cadaveric transplant that could then go to someone else. I think it's selfish of people to refuse a living donor and make the list more crowded. My Mom wanted to donate and I'll admit that I was a bit relieved that she wasn't eligible, but I would have taken it and left a list spot for someone else had we worked out.
Cora
Then that makes me three times selfish.
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As a mom of a younger person waiting for a kidney, I still cannot say I would deny a kidney
to an 85 year old. I agree that you should accept a living donor if you can, because there are
so many people who do not have anyone to donate for them, and the waitlist is their only
option.
My interest is more in the area of matching ages of donor and recipients. Now that they have
"expanded criteria donors" there's a better chance for an older person to get a kidney from
someone their own age. It seems crazy to me that an 85 year old could get the kidney of a
35 year old, while a 20 year old may receive one from a 60 year old. It's not the best use of
the kidneys.
~Karol
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I guess it depends which side of the bathroom door you are on as to wheather its an emergency. I'm glad that kidneys go to younger people first. There doesn't seem to be any controversy about that.
I'm one who thinks the "death squad" needs to come back. These people who are transported to dialysis on a stretcher and don't even know what the hell is going on should be denied dialysis....and yes....die. People die at some point; why is that so hard to understand! As a (former) taxpayer I think its bullshit to keep everyone alive just because they have a pulse. Medicare can't afford to do this and keep the young one alive to enjoy the life of a transplant.
Just because this guy was a former doctor doesn't make him worthy of a transplant! I'm sure there are lots of old people who were giving and productive throughout their lives.
There are older cadavaric donors.......70+ where they take both kidneys and transplant them into someone. There should be some common sense after the computer comes up with the best 4 or 5 candidates. YES the younger patient should get a kidney first. If they have made the hoops to get on the list then they should get a kidney. But, I think 85 is just too damn old. They have had a full life. They shouldn't even be put on dialysis at 85. AND yes I'll be the first to go if I live to be 85. I'll also be the first to go the minute I have a stroke and don't know my name. THE only reason I'm on dialysis is because I have hope for another transplant. BUT.....I want the young to go first and I want those who have never had a transplant to go first. Looks like I'll be waiting a long long time. That's fine!
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I think that some of the criteria are already in place. We all had to go through a battery of tests to make sure that we were healthy enough for a transplant. I know that here in the Ottawa area they have given kidneys to folks in their 70s because they were otherwise healthy. I think that the health criteria alone would preclude many older people.
On a slightly different, but still controversial note, I wanted to say that I don't think it's right for people to deny their donors and wait for a cadaver. Some people are forced to wait for a cadaveric kidney because they have no donors. If living donors are available, I think that they should be the first priority. More living donation would in effect facilitate 2 transplants. The living donor transplant and the cadaveric transplant that could then go to someone else. I think it's selfish of people to refuse a living donor and make the list more crowded. My Mom wanted to donate and I'll admit that I was a bit relieved that she wasn't eligible, but I would have taken it and left a list spot for someone else had we worked out.
Cora
Then that makes me three times selfish.
If you don't mind my asking, why didn't you accept your living donor? And I just read elsewhere that you are on dialysis. Have you had 3 cadaveric transplants?
Cora
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I have a question. How in the world do these people get three or four transplanted kidneys? I can't even get one or on the list. Seems kind of unfair to me that someone should get three of four shots at a transplant. Give the people who have been on the list a long time a shot at one of those kidneys!
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If you don't mind my asking, why didn't you accept your living donor? And I just read elsewhere that you are on dialysis. Have you had 3 cadaveric transplants?
Cora
No, I said that according to you I was three times selfish because I turned down three potential living donors.
I understand why you find this selfish and I agree it is a legitimate opinion, but I don't subscribe to it. If you look at it from a different angle, by accepting a kidney from a living donor you are dragging this person (in my case the obvious choice would have been my mother) into your diseased world. I know the risks associated with donating a kidney are small, but they are not minimal as some doctors suggest. There can be complications during the procedure, the first weeks will be tough, they will get a scar, they might have elevated blood pressure down the road and they are left with a single kidney; if anything happens to that one they will be on dialysis themselves. Taking this into consideration plus the fact that if anything ever happened to my mom because of me I would NEVER forgive myself, I find the act of accepting her kidney infinitely more selfish than waiting on the list for a cadaveric kidney (which, as you say, could have gone to somebody else).
On top of that, as you know kidney transplants aren't always successful, sometimes they fail immediately or within the first year. How can you live with the fact that you've vampirized one of your loved ones for nothing? I for one would feel guilty for all my life.
Don't get me wrong I don't think we should stop living donors donating kidneys. I have nothing but admiration for the brave people who spontaneously offer a kidney to a person they care for. I think it's an act of sheer beauty and humanity and I feel a hundred times blessed that three people came forward for me. But I also don't think it's for everyone and I think each one of us has to really think through what it means to receive a kidney from someone and what the long term implications are, both medical and psychological.
I admit that my opinion would be different if it was impossible to survive very long on dialysis, or even if the quality of life on dialysis was despicable. As far as I'm concerned, I still live a nearly normal life on dialysis. I still work almost full time, pay my bills, travel a bit, have a social life, practice several sports, etc. And I feel good almost every day. After the tx I will still have to take plenty of nasty meds for the rest of my life. If all goes well I expect the transplant will significantly improve my quality of life, but not radically.
I hope this answers your question. If you still think I'm selfish then I respect your opinion but I'm not going to change my mind. I ask myself the question 'what if I had accepted the kidney already?' and I always feel that my decision was the right one. And I don't feel selfish for taking that decision.
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Is an 85 year old person worthy and also deserving of getting a transplant as much as a younger one?
Probably I would say.
But at who elses expense?
That is extremely difficult to establish.
( and I'm obviously not speaking from a financial point of view )
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Well, jdat, how about the financial point of view? It is a problem, too. My sister has offered me a kidney. We haven't done tests yet, so I don't know if she's a match beyond our mutual blood type, but after reading the posts on here, I'm sure it won't matter. We can't afford to pay for her medical care if she does donate. Medicare will only pay 80% of her costs. Her insurance won't cover so much as an aspirin for something they consider elective. My private insurance will pay my 20%, but it won't pay any of her fees. Plus there's lost wages, transportation costs (transplant centers are few and far between where we live), child care while she's recovering. . . .
Goofynina was given a $50,000 price for the matching donor she has found to do the surgery. No one in my family has that kind of money.
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Well, jdat, how about the financial point of view? It is a problem, too. My sister has offered me a kidney. We haven't done tests yet, so I don't know if she's a match beyond our mutual blood type, but after reading the posts on here, I'm sure it won't matter. We can't afford to pay for her medical care if she does donate. Medicare will only pay 80% of her costs. Her insurance won't cover so much as an aspirin for something they consider elective. My private insurance will pay my 20%, but it won't pay any of her fees. Plus there's lost wages, transportation costs (transplant centers are few and far between where we live), child care while she's recovering. . . .
Goofynina was given a $50,000 price for the matching donor she has found to do the surgery. No one in my family has that kind of money.
You are right but your reply, and I mean not disrespect by saying this, is pretty much irrelevant to the matter of seniors getting a transplant over younger candidates. I am fully aware of financial issues involved with the matter....
While it's true that increasing costs for the senior category, baby boomers, etc is only going to increase over the years due to extended life expectency the moral dilemma that will arise is establishing when enough is enough ?!
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I wasn't taking aim at you, jdat, just trying to respond to Cora's queries about why someone wouldn't accept a living donor.
The question of "when enough is enough" just seems like such a slippery slope to me. Anytime the docs start making decisions about who is entitled to treatments, the hair on the back of my neck starts to stand up. I realize that people place values on other people's lives every day, but how long before they decide I'm not worth anything either? We're all going to get old eventually - at least I'd like to try.
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If you don't mind my asking, why didn't you accept your living donor? And I just read elsewhere that you are on dialysis. Have you had 3 cadaveric transplants?
Cora
No, I said that according to you I was three times selfish because I turned down three potential living donors.
I understand why you find this selfish and I agree it is a legitimate opinion, but I don't subscribe to it. If you look at it from a different angle, by accepting a kidney from a living donor you are dragging this person (in my case the obvious choice would have been my mother) into your diseased world. I know the risks associated with donating a kidney are small, but they are not minimal as some doctors suggest. There can be complications during the procedure, the first weeks will be tough, they will get a scar, they might have elevated blood pressure down the road and they are left with a single kidney; if anything happens to that one they will be on dialysis themselves. Taking this into consideration plus the fact that if anything ever happened to my mom because of me I would NEVER forgive myself, I find the act of accepting her kidney infinitely more selfish than waiting on the list for a cadaveric kidney (which, as you say, could have gone to somebody else).
On top of that, as you know kidney transplants aren't always successful, sometimes they fail immediately or within the first year. How can you live with the fact that you've vampirized one of your loved ones for nothing? I for one would feel guilty for all my life.
Don't get me wrong I don't think we should stop living donors donating kidneys. I have nothing but admiration for the brave people who spontaneously offer a kidney to a person they care for. I think it's an act of sheer beauty and humanity and I feel a hundred times blessed that three people came forward for me. But I also don't think it's for everyone and I think each one of us has to really think through what it means to receive a kidney from someone and what the long term implications are, both medical and psychological.
I admit that my opinion would be different if it was impossible to survive very long on dialysis, or even if the quality of life on dialysis was despicable. As far as I'm concerned, I still live a nearly normal life on dialysis. I still work almost full time, pay my bills, travel a bit, have a social life, practice several sports, etc. And I feel good almost every day. After the tx I will still have to take plenty of nasty meds for the rest of my life. If all goes well I expect the transplant will significantly improve my quality of life, but not radically.
I hope this answers your question. If you still think I'm selfish then I respect your opinion but I'm not going to change my mind. I ask myself the question 'what if I had accepted the kidney already?' and I always feel that my decision was the right one. And I don't feel selfish for taking that decision.
I guess I didn't really mean "selfish" as harshly as it sounded. I just think that accepting a living donor allows someone who doesn't have the support and love that you do to get a kidney sooner. You are fortunate in that you seem to be doing ok on dialysis. Many folks, like myself, do not. I see the living donation also as a choice, a risk these people are willing to take. They would run into a burning building to save you, and giving a kidney is a lot safer than that.
Sorry, I didn't mean to upset you with the word "selfish" and I would only consider you "3 times selfish" is you had had 3 cadaveric kidney transplants.
Cora
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Sorry, I didn't mean to upset you with the word "selfish" and I would only consider you "3 times selfish" is you had had 3 cadaveric kidney transplants.
Cora
What about the patient who received a living related kidney, which lasted three years. Went back on hemo. Then they received a cadaveric from the list, which lasted 10 years. Went back on hemo. Now they're back on the list for a third transplant ... a cadaveric. Is that selfish? Should they not be allowed on the list again? Should they have to wait until all 64,000 on the list get theirs first?
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I think that after the computer does its thing and finds a few candidates then a "human" needs to make some choices as to who gets the kidney. If the three are all perfect matches:
30 year old, listed 3 years, perfect health, no prior transplants.
45 year old, listed 3 years, perfect health, one prior transplant.
85 year old, listed 3 years, diabetic, heart valve replaced 5 years ago, no prior transplant.
To me......it is obvious that the 30 year old gets at least one kidney and the next would probably go the the 45 year old.
I'm sure not everyone would choose the same.
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Here's a new wrinkle to the discussion:
What if the list is prioritized by the number of years the patient is on dialysis, not by the years he or she is on the list? Is that a good move for UNOS?
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Here in Canada you can't go on the list until you are on dialysis.
Cora
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Here in Canada you can't go on the list until you are on dialysis.
Cora
That's not what I mean.
Not everyone on dialysis has their name on the list. But if they decide to go on the list, say 10 years after starting dialysis, they would be higher on the list than a dialysis patient who was already listed for three years. Prioritizing the list to years on dialysis, not how long the name was on the list.
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I think that is the way the UNOS system is going to go now. My transplant doc mentioned something to me that the procedures would be changing and are changing. Personally, since I would benefit from it, it is great. I have been on dialysis eight years and trying to get on the list for all of those years. It just takes time to get there. So why punish me for being longer on dialysis than anyone else. I have served my time. I think UNOS realizes that the wheels of transplant teams turn slowly and some people get screwed over in the long run. But then I think the whole damn ting needs revising. I am with Rerun on her opinions about whether people should be weeded off the list by age or illness. Hell, I can't even get on the damned list and I am pretty healthy right now! Plus I am only 43.
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Not everyone on dialysis has their name on the list. But if they decide to go on the list, say 10 years after starting dialysis, they would be higher on the list than a dialysis patient who was already listed for three years. Prioritizing the list to years on dialysis, not how long the name was on the list.
No, because they must not HATE dialysis enough to get on the list in the first place. So, no to that thought! ;D
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Here in Canada you can't go on the list until you are on dialysis.
Cora
That's not what I mean.
Not everyone on dialysis has their name on the list. But if they decide to go on the list, say 10 years after starting dialysis, they would be higher on the list than a dialysis patient who was already listed for three years. Prioritizing the list to years on dialysis, not how long the name was on the list.
Gotcha. And yes, that's how they do it here. You get credit for "time served".
Cora
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But like I said I have been waiting for years to get listed, but the med teams will do nothing. I was healthier three years ago when they looked at me for transplant than I am now doing the same thing. I think I should get credit for years served! I did everything I was supposed to then and now. The wheels turn very slowly here.
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Well I just came across this post and have read each post, now I have some comments.
I don't think UNOS should change to start the time for longest on dialysis, HOWEVER, I do believe that people like kitkatz who have been TRYING to get on the list, should have all those years on dialysis added in to their wait time on the list. For someone who's been on dialysis 10 years, but has never wanted to be on the list, now all of a sudden they do.. there time should start when they first get on the list.. their time on dialysis should not be added in like kitkatz, b/c the difference is, she is trying, they were not. Because for people like me who started dialysis and started trying to get on the list right away... its unfair to just take how long you have been on dialysis into consideration.. I would be waiting a long time if that were the case, b/c only months after starting dialysis I was on the list. Get what I'm saying?
Also, I do think age should play a big role in UNOS system. I agree with Karol, the available kidney should go to the person it would benefit most. Meaning a 20 year old kidney needs to go to someone young, not someone in their 60's and such. I also believe there should be an age limit to even getting on the list... a lot of people on the list now, don't have many years left with or without a kidney... i don't see how its fair they should get a kidneythat would last many years over a younger person who could last right along with that kidney.
Again, I agree with ReRun on a few things... someone who is coming to dialysis on a stretcher.. they don't even know whats going on.. I mean cmon, their family needs to let go already, they are putting that person through torture in my opinion. Also, I think in the end, the final decision should be made by a human, not a computer.
The kidney I just received, was a perfect match, and from what i know, that means I went to the very top of the list when it was all entered into the computer... then it was up to my doctors to decide if I was medically and psychologically prepared for this kidney. Obviously every year we wait on the list our health needs to be re-tested and updated o make sure we are still healthy enough to stay on the list, and also our psychological view on everything should be considered... as over the years, dialysis does take its toll and some people end up just wanting to stop dialysis.. end it all....
As for living donors, when i was on dialysis in 99, and 20 years old... my mother DEMANDED to be tested, and would NOT take no as an answer. That kidney failed after 5 years, she was not even upset, I was however, as I felt I let her down, but she says I did fine, and she wouldn't change anything. She has even gone to the extent of saying that if I'm on dialysis again when she gets older she will be putting it in her will that she wants her other kidney (if its healthy enough), to go to me, as she already knows we match. I would do the same for my daughter, and I guess in order to understand that way of thinking you would have to know what its like... For me, I have a daughter, so I know exactly how my mother feels.
I also have 3 brothers... 1 demanded to be tested when i went back on dialysis in 2004.. he was tested, he matched, however when they did the ultrasound, his left kidney, the vein to connect to me, is too small so if they took it out of him, they wouldn't be able to connect it to me. His right kidneys vein is wrapped around a main artery, no doctor will go near that kidney, and I wouldn't want them to regardless as the chances of cutting the main artery is too great. 1 of my other brothers doesn't like needles, and will not be tested, and I'm fine with that, its his choice. My last brother was going to be tested, but he got Lyme Disease and can no longer donate blood or anything else, and is on the national Lyme Disease registry so the Dr's know he cant donate blood or organs.
This is a very touchy subject, and everyone will have their own opinion, in the end... it comes down to Dr's and UNOS on making the call.
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Here's a new wrinkle to the discussion:
What if the list is prioritized by the number of years the patient is on dialysis, not by the years he or she is on the list? Is that a good move for UNOS?
I don't think it's the top priority, but they are now using time on dialysis as a consideration here in Michigan at U of M, Ann Arbor. If I get on the list, my "wait time" will start as of Dec 11, 2006 - my first day on dialysis. The surgeon said part of the reason for doing so was that a large number of patients aren't referred by their own docs when they first should be. Counting their time on dialysis is a way of balancing that.
They do use age as a consideration as well - at least for the kids - anyone 18 or under gets top priority here, as well. I don't know how much they use it for adults.
A perfect match is still top priority over everything else.
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My last brother was going to be tested, but he got Lyme Disease and can no longer donate blood or anything else, and is on the national Lyme Disease registry so the Dr's know he cant donate blood or organs.
Hmm, that's odd... Lyme disease was never a reason to be permanently prohibited from donating - after all, its curable by antibiotics (may, however, have some permanent effects if treated too late.) In addition, the guidelines for donating organs are much more generous than those for donating blood - many conditions or diseases that blood banks won't accept (I'm permanently rejected because I lived in Europe*!), are perfectly acceptable for organ donations.
DeLana
*And am supposedly at risk for getting mad cow disease! Come on, I don't even eat meat! ::) But the blood donor guidelines can be ridiculous. However, nobody would hesitate to accept me as an organ donor...
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Thanks, okarol, for sharing this. Very interesting, lots of questions raised.
- Why not consider only kidneys from elderly (diseased) donors for elderly patients? There should still be plenty.
- If someone rejects offers from living donors, should he/she be placed on the list? (Of course, the potential living donors need to be counseled regarding the odds of graft survival - and in this case, recipient survival - but thorough counseling is part of the process anyway.)
Personally, I think the kidneys of very young people - like in this case - should be considered for younger recipients, or at least those under 60. I don't think that very old patients (>80) should get priority, however, they should have a chance at an organ from a donor over 60 or so (or from a living donor).
JMHO.
DeLana
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Things can turn rather strange at times. I've spoken with several elderly patients who made it quite clear "THEY DO NOT WISH" to undergo translant procedures and "Take all those meds". Somehow their nephrologists must have decided to add them to the list halfway against their wishes...
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I think patients need to be very aware of what is being offered to them as a transplant. Ask questions and get answers.
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I think patients need to be very aware of what is being offered to them as a transplant. Ask questions and get answers.
I agree!
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My last brother was going to be tested, but he got Lyme Disease and can no longer donate blood or anything else, and is on the national Lyme Disease registry so the Dr's know he cant donate blood or organs.
Hmm, that's odd... Lyme disease was never a reason to be permanently prohibited from donating - after all, its curable by antibiotics (may, however, have some permanent effects if treated too late.) In addition, the guidelines for donating organs are much more generous than those for donating blood - many conditions or diseases that blood banks won't accept (I'm permanently rejected because I lived in Europe*!), are perfectly acceptable for organ donations.
DeLana
*And am supposedly at risk for getting mad cow disease! Come on, I don't even eat meat! ::) But the blood donor guidelines can be ridiculous. However, nobody would hesitate to accept me as an organ donor...
Not sure why... but they said he can't donate due to the Lyme Disease, he's not allowed to even be tested. It's all fine anyways, since I dont need one at the moment. I dont know if he would of been tested without the Lyme Disease or not... I was just getting around to asking him, his wife was willing though.
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The best short to medium term solution could be the European-style presumed consent system.
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The best short to medium term solution could be the European-style presumed consent system.
There was a vote where I live and it got turned down :(
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Here's a new wrinkle to the discussion:
What if the list is prioritized by the number of years the patient is on dialysis, not by the years he or she is on the list? Is that a good move for UNOS?
In Australia the list is from the day of your first dialysis treatment. Even if you are lucky enough to be put on the list early, it doesn't count. They say you are given 'points' for your age ect. But it really comes down to dialysis time.
Ie: 2 patients are a perfect match- The one on dialysis longest is more likely to be given the transplant.
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But like I said I have been waiting for years to get listed, but the med teams will do nothing. I was healthier three years ago when they looked at me for transplant than I am now doing the same thing. I think I should get credit for years served! I did everything I was supposed to then and now. The wheels turn very slowly here.
Kat- Here you would be back dated to when you started dialysis. I do think you deserve the credit for the years served!!! You would jump ahead of me.
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The reality is that selection is made by celebrity status & wealth, best match, time on list, age & physical condition (the sicker will go first).
I was 37 years old on D for 14 years in '87' and listed for 8 years and never transplanted with high antibodies and got passed up for a kidney that went to a 65 year old man because he was less stable on dialysis. Back then the sicker trumped age and time on list.
With the Obamacare program I believe the 30 thru 50 working age segment will be the priority.
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They can't get those artificial kidneys up and running and 'working' fast enough !
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UNOS is in a terrible situation. There are approx 100,000 people waiting for a kidney. There are nowhere near that many donated kidneys. I believe that the people who work on the list are trying to do the best they can for everyone. The rules have changed before and they will change again. When society changes like having an aging population they have to re-evaluate. I am very disturbed when things are compared to the Nazis. I don't think that's appropriate.
I do believe that families should be encouraged to look at the whole picture and what they are doing to Grandma. Those old people brought in on stretchers totally unaware should not be there. We should all acknowledge that life does end. We will miss Grandma when she dies but that is not the way to keep her alive.
For those who talk about rationing care, care has always been rationed. Have you ever been told your insurance company won't cover a procedure or a medicine? That was rationing. We need to figure out appropriate rationing and also do a little self rationing. We should all have living wills and health care power of attorney and be clear with our family what we want and don't want. I know my illness is terminal and I have been very clear that they are not to torture me.
I did accept my mother's kidney for my first transplant. She wanted to. It lasted 11 years. There was no guilt when it failed. But then I had no living donor offers for my second and got a cadaveric donor. My father is an incompatible blood type. The rest of my family doesn't want to be tested. You can't make them. But if someone had offered and matched, I would have taken it.
I think it's really complicated and made worse by our personal emotions about our disease.